A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)

Friday, May 28, 2010

Penny Turns Three!!

Three years ago today, it was Memorial Day 2007. I opted to stay inside and rest while my husband and my son went off to spend the day with Scott's family. I know they swam in the pool and had lots of fun. Around 11 am, I got an itch to organize everything. I cleaned out the cabinets under all the sinks. I emptied out the linen closet (something that hadn't been done in the three years we lived here); then organized the items back in. Around 2 pm I started feeling hungry and I was tired of cleaning so I went to my mother's house where she was also hosting a BBQ.

Ah, my last day of being a mother to 1 and I didn't even spend it with my son. After a few hours with my family I decided to clear out. I still had a couple of small items that I wanted to have ready in my bag in case the D-day came so I swung by Stop and Shop. Oh, how happy I was, strolling down the aisles thinking about how my new baby would be. I didn't even know if I was having a girl or a boy.

Once I was home, I relaxed, checked my bag again. Then, at about 9 pm, I started to feel what I thought were contractions. Don't ask me why, but I thought to myself, "oh boy I better eat before this gets serious because who knows when I will eat again, and anyway, this might not really be labor." So I reheated myself some turkey meatloaf and cauliflower. I tried to rest, but the contractions were nagging me and I couldn't get back to sleep. At midnight, I called my ob/gyn's office, I was asked to call back when the contractions were closer together. At 2 am, they were closer together, so I called again. I was instructed to go ahead and meet them at Manchester Hospital. Before Scott and I got our stuff and our son together, it was almost 3 am! We were almost to the hospital when we realized that we forgot the digital camera, so I made Scott turn around. I continued to moan and cry out, and my sweet 4 year old son asked me to "stop making so much noise." I love him!

We dropped Nathaniel off with my mother (2 blocks from the hospital literally, so it made more sense to bring him to her) and we went to meet our new child. During my entrance exam at 3:30 am, I was told I was 6 cm and I was quickly assigned a room. By 5 am I was ready to push!

Our child was not born until almost 7 am due to the fact that I think she was coming down face up instead of face down. The back pain was pretty much unbearable and I couldn't find a position that seemed helpful. You see, I opted against an epidural for both my children. But finally she came and a sweet child was put on my belly.

Those eyes and that small mouth instantly revealed her secrets. I didn't even know if I had a boy or girl and someone reminded me to check between her legs and announce the news. It felt like I was going through trained motions, but I knew there was some devastating news to share, and I just couldn't. I just couldn't bring Scott down. And what would he think of me if I had been wrong? So, I quietly said, "Look, she's a girl." There was no excitement in my voice, no overwhelming joy like I had for my first born. My first born. . . I thought back to when I had him and how the first thing I did was kiss some slimy stranger newborn all over his head and tell him how much I loved him. I tried to do the same thing for my daughter. I kissed her once, and I told her I loved her, but I know it didn't sound convincing.

Soon, before we had even named her, some nurse told us that it seems our daughter might have Down syndrome. No one would know for sure until the results of a blood test came back, but the nurse felt pretty confident of her diagnosis. Scott and I stared at each other. We asked to hold her some more. We were reminded that a name might be appropriate. Scott told the nurses the name that we had planned. It seemed wrong, we had planned that name for a different baby, but it was the only girl name we agreed on, so this new baby was then named Penelope Ringrose.

I focused on doing the motherly things I was supposed to, so the next thing to cross off my list was breastfeeding. Scott and I seem to remember that she latched on pretty well. I nursed on both sides and then cuddled with her until a nurse asked to take her back so they could look her over again.

A couple of hours later a neonatologist walked in and told us that our newborn had some serious cardiac problems because she was unable to sustain her blood oxygen levels. I truly thought that the next words out of his mouth was going to be "We did everything we could, but she is gone." I choked back tears waiting for bad news, but instead, I learned that she was being sustained and that she would need to be transferred to Hartford where she would get a better look and possibly a surgery very soon if needed.

At noon, when she was only five hours old, a team from UConn, took my daughter away to transport her to Hartford Hospital/CCMC's NICU. Scott followed them and I was left alone. I tried to sleep, and I may have for a little bit. It was hard and I was depressed. I could hear the other babies crying for their mothers through the hallway, but I didn't have my baby. I ended up getting discharged at 7 pm, after the nurses made me eat a filling dinner. It was so crazy to think that I was only twelve hours postpartum and I was going across two towns to see my new girl.

Scott picked me up and drove me to Hartford to check everything out. It was so surreal. I was tired, my eyes were puffy from all the crying I did, and I didn't have any clothes that fit me. I also didn't have my baby with me. I will never forget that first trip to the fifth floor, it was dark and quiet on the floor so that the babies could sleep. I scrubbed in and met some professionals. I finally saw my daughter on her warming tray. She was bright red and she looked so irritated. She kept squeezing her already puffy eyes shut and sometimes that made her eyelids flip inside out. Every few moments she would have a sad trembling lip and attempt to cry a little. She seemed like such a stranger, but my heart really did go out to her. What an awful way to start your birthday! I thought.

Well, it really didn't take long for me to fall in love with her. It especially helped when I was allowed to hold her again and also, try to nurse her again when she was ten days old. She ended up having surgery when she was 6 days old to correct a heart defect and she recovered so well. Instead of asking, why me? Why was a burdened with a disabled child? I wonder why I was blessed with such a perfect being. I truly feel so lucky to have been blessed with her.

HAPPY BIRTHDAY MY LITTLE PRINCESS. I know that this year is going to be incredible for you. School will be a challenge, but you will overcome and exceed everyone's expectations!! I love you!

2 comments:

Awe Mo! Don't you wish we knew then what we know now!!!! It's unfortunate that "finding out" has to be such devastating news. It's just so hard to imagine at the time what an amazing gift we've been given. Love to the Princess on her special day!!!! See you tomorrow (hmm, it's after mid-night. . . see you later today!)

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.